Thursday, July 19, 2012

Adventures Outside the Box: Attempting a Naturopathic Treatment

Since my disease has proven to be extremely difficult to treat (I've always been something of a problem child), I'm quite open to new ideas about possible therapeutic options, as long as they make some scientific sense and don't present too much downside. I recently came across a research study (sent to me by a fellow MSer) that led me to investigate and then start a naturopathic program of medicinal herbal supplements, under the guidance of the terrific naturopathic doctor that is part of the team at my neurologist's clinic, the International Multiple Sclerosis Management Practice here in NYC (click here). Before I get into the details of this treatment regimen, please allow me to first provide a little background.

One of the most intriguing MS drugs now in the approval pipeline is BG-12, an oral drug that has been shown to be quite effective throughout a series of rigorous clinical trials (click here). Developed by biotech company Biogen, makers of Tysabri and Avonex, BG-12 differs from all other approved MS disease modifying drugs in that it does not directly suppress or modulate the immune system, mechanisms of action which are the reason why so many of the current drugs have daunting side effect profiles. Rather, BG-12 works by stimulating the body to produce enzymes that are strong anti-inflammatories and very effective antioxidants, thereby presumably protecting the body against the debilitating effects of oxidative stress, a biologic process that can lead to the damage and death of cells in the central nervous system (as well as other tissues throughout the human body).

BG-12 is a derivative of a natural product (it's an ester of fumeric acid, which is found in some mushrooms, lichen, and moss) that has been used generically in Germany for years to successfully treat psoriasis. I'm not sure how Biogen was able to patent this molecule and make it into what I presume will be a tremendously expensive drug, but we saw the same thing happen with 4-AP and Ampyra. All of this is fodder for a Big Pharma rant that I won't get into now.

Oxidative stress occurs as the result of the natural process of mixing oxygen and nutrients together to produce the energy needed to sustain animal life. One of the byproducts of this process are free radicals, unstable atoms or molecules that can damage or destroy healthy cells in the human body if left unchecked. Free radicals can be likened to the biologic equivalent of the exhaust fumes produced by automobile engines when they combine oxygen and gasoline to produce the energy necessary to propel a car. Just as you wouldn't want to breathe in too much of the exhaust coming out of your car's tailpipe, you don't want too many free radicals banging around inside your central nervous system doing irreparable damage.

Under normal circumstances, the human body has a variety of mechanisms in place to combat the effects of oxidative stress, by mopping up and containing free radicals before they can do much harm. In patients suffering from any one of a variety of neurologic diseases, though, it appears that the levels of oxidative stress become too great for the body's natural defenses to handle, which results, at least in part, to the damage in the brain and spinal cord seen in such diseases as Multiple Sclerosis, Parkinson's, and Alzheimer's. The reasons behind these high levels of oxidative stress remain unclear, but if they could be positively identified we'd likely only be a few clicks away from tremendous advances in effectively combating some horrendous illnesses.

Okay, enough with the scientific mumbo-jumbo, let's get to the good stuff. As I mentioned in the opening paragraph, about six weeks ago an MS friend sent me an e-mail containing a link to a study which showed that a dietary supplement called Protandim was more effective than BG-12 at stimulating the production of the same antioxidant enzymes as Biogen's soon to be approved MS drug, at least when tested in a petri dish (click here). Surprisingly, the study was sponsored by none other than Biogen! I'd never heard of Protandim, but a quick Internet search divulged the ingredients included in each Protandim capsule (click here).

Intrigued, I sent a note containing this info to Dr. Deneb Bates, the naturopathic doctor specializing in neurologic disorders who is part of the treatment team at the MS clinic where I'm a patient. Dr. Bates quickly got back to me, saying that she was a big fan of all of the stuff contained in Protandim, but that the dosages of the individual ingredients in each capsule of Protandim were too small to likely have a therapeutic effect on patients suffering from debilitating neurologic diseases. Dr. Bates suggested that I could try taking each of the ingredients individually, in dosages high enough to perhaps make a difference. First, though, she wanted to consult with my neuro, Dr. Saud Sadiq, to make sure he'd be on board with the plan. Dr. Sadiq checked my files to go over the results of some comprehensive analyses of my cerebrospinal fluid that his research lab had done a few years ago, and found that my markers for oxidative stress were tremendously high, therefore making me an especially good candidate on whom to try this experiment. So, with everyone in agreement, I started on the following program of supplements, beginning about a month ago.

Before I go ahead and detail the treatment regimen Dr. Bates came up with, I must advise anybody who would like to follow a similar treatment plan to first consult with their physician, because many of the following ingredients can interact with the wide variety of medicines MS patients typically take to control their symptoms. For this very reason, rather than start all the supplements at once, Dr. Bates wanted me to begin them a few at a time, so that we could judge which components were causing whatever negative side effects might crop up. With this in mind, on week one I started taking:

♦ Curcumin (500 mg, 3X/day)-Curcumin is a component of tumeric, a spice commonly used in curries and other Asian recipes. Curcumin has long been used for medicinal purposes in Ayurvedic medicine, the traditional medicine that has been practiced in India for about 2000 years. It has many purported beneficial qualities, and has been shown to be an effective anti-inflammatory as well as a strong antioxidant (click here).

♦ Milk Thistle (250 mg 2X/day)-Milk Thistle is a flowering plant in the daisy family that has been shown to have liver protective and antioxidant properties (click here). Before starting Milk Thistle, blood tests showed that my liver enzymes were somewhat elevated, likely because of the pharmaceutical cocktail I take to combat my neurologic symptoms and some other potentially serious health issues I'm dealing with. After only one month on Milk Thistle, my last blood test showed that my liver enzymes had fallen dramatically. Yay, Milk Thistle.

I didn't suffer any ill effects from the Curcumin or Milk Thistle whatsoever, so on week two I started:

♦ Green Tea Extract (250 mg 2X/day)-Green Tea Extract is purported to have antioxidant, anti-inflammatory, and anti-carcinogen properties (click here). Dr. Bates suggested that rather than take Green Tea Extract in capsule form, I could drink 8-10 cups of green tea a day, but I informed her that if I did that I would have to take up permanent residence in my bathroom, as I very likely would never stop urinating. Much better, for me at least, to take the stuff in capsule form.

♦ Bacopa (200 mg 2X/day)-Bacopa is a perennial flowering plant that has long been used in Ayurvedic medicine. Tests have shown it to impact the oxidative stress process, and Bacopa also exerts a positive influence on memory and mental acuity (click here). Tests also suggest that Bacopa may also be neuroprotective against Alzheimer's disease (click here).

I didn't suffer any negative side effects from the Green Tea Extract or Bacopa, so on week three I started the final ingredient, one which Dr. Bates was a little more wary of:

♦ Ashwagandha (500 mg 2X at bedtime, starting out taking only one capsule first to judge the effects)-Ashwagandha is sometimes called "Indian ginseng", because it is used in Ayurvedic medicine much the same way that ginseng is used in traditional Chinese medicine, to treat a wide variety of diseases. Ashwagandha is thought to be an adaptogen, a medication that normalizes physiological functions through the correction of imbalances in the neuroendocrine and immune systems (click here).

Unlike my experience with the previous four ingredients, I did have a hard time with Ashwagandha. Dr. Bates had me start out slowly, taking only one capsule a night, and by the second day I felt extremely sedated and very weak, with many of my neurologic symptoms noticeably ramped up. After consulting with Dr. Bates, we decided I should simply stop taking the Ashwagandha, since the goal of our experiment is to make me feel better, not worse. I was disappointed to have to stop taking the stuff, though, because of its many purported positive qualities. Dr. Bates did single Ashwagandha out to be the most potentially problematic ingredient of the bunch, and I'm glad we saved it for last and started slowly. The scientific name for Ashwagandha is Withania Somnifera, and somnifera means "sleep inducing" in Latin. Boy, in my case at least, they weren't kidding…

It's too soon to tell whether or not this adventure in naturopathic medicine is having any positive neurologic results, although my wife thinks I seem a little bit stronger. As I noted previously, my liver enzymes have come down significantly since I started taking Milk Thistle, so that's one benefit I'll definitely chalk up to the herbal medley. Dr. Bates told me she has several other neuroprotective and/or antioxidant supplements she wants to add to the mix, and I have an appointment with her in a couple of weeks to go over these. I will of course keep everyone updated if more mojo gets added to the brew.

I have to admit I was a little bit skeptical about all this going in, but the liver enzyme results can't be denied. The health of my kidneys has also been of major concern because of some of the pharmaceuticals I have to take, and recently my blood test markers for kidney function have been creeping near or above the normal threshold. Dr. Bates started me on a tincture called "Pellitory of the Wall" (eerily reminiscent of "Eye of Newt"), and after only three weeks my latest blood tests showed that these levels, too, have fallen back well into the normal range, a change so dramatic that my pain management doctor seemed stunned when the test results were faxed to him (I was there when he got them), and repeatedly insisted that he needed to call Dr. Bates to find out exactly what she had given me.

Although all of these herbs and other substances sound like something from a witches brew, I can assure you that to date I've found no evidence that Dr. Bates is a witch. I've had my eyes peeled for signs of black cats, broomsticks, and flying monkeys in her office, but so far my investigations have come up empty. She did once briefly turn me into a salamander, but I got better (apologies to Monty Python).

Again, I don't recommend anybody start this program without first consulting with their doctor, as some of the ingredients may be contraindicated by medications you're taking or some underlying condition you may suffer from. It's easy to think, "Oh, herbal supplements, what harm can they do?", but my experience with Ashwagandha definitely was a negative one, and the effects that herbal remedies have recently had on my kidney and liver enzymes were swift and dramatic. Remember, too, that marijuana and magic mushrooms are also "herbal remedies", and those certainly can pack a wallop. Not that I'd know anything about that…

Thanks for the links, I am of course quite familiar with Joan Beal's work on behalf of CCSVI, but I am kind of Facebook phobic so I rarely visit Jones CCSVI Facebook page (or any Facebook page, for that matter). Don't know why I shy away from Facebook so much, I suppose I should start a WK Facebook page one of these days. For some reason Facebook just hold very little appeal for me…

Marc, I appreciate your never-say-never attitude, and finding that this herbal cocktail is not a complete wash is great news indeed. Lower liver enzymes, a little more energy, better renal functioning -- nothing to sneeze at. As for the Ashwaganda - you're right; it's good that they added that to the mix last.

Thanks for the well wishes, and as for my attitude, I vowed very early on that if this disease was going to take me down, it was going to take me down with both fists very well bloodied.

This naturopathic approach makes a lot of sense, in that the ingredients all have long histories of medicinal value, and have strong antioxidant properties. Since we know that MS (and other neurologic diseases) feature oxidative stress is one of the reasons for nervous system cell damage and death, taking antioxidants seems very logical. The biggest questions involve whether each ingredient can get past the blood brain barrier, but if you throw enough spaghetti up against the wall, a few strands bound to stick.

I'm for whatever works as well. I remember watching a Montel Williams show sometime in the mid-90s in which he featured bee sting therapy as a treatment for MS, and had a parade of patients telling him how effective the treatment was. I guess they've done clinical trials since then that disprove the bee sting therapy theory, but MS varies so much from patient to patient, and they're such a high degree of misdiagnosis, that who knows what might work for one patient that doesn't work for many others? With all of the decades of research that have been done, the best be MDs can do still is to make educated guesses…

hello kamikazeexcellent article thank very much for your informationin multiple sclerosis there is another very importante antioxidant, the uric acid!!uric acid reduces peroxinitrites in brain and spinal cord, and multiple sclerosis patients have low uric acid level frecuently.there are a lot of studies about this fact.during a long time you should be on this treatment??what is the opinion of your doctor about treatment duration?other alternative treatment for multiple sclerosis is homeopathy. for example pulsatilla compositum, ruta 6ch, rhus toxicodendron, gelsemium homaccord, cerebrum compositum...are very good for ms. the functions are improve blood circulation in brain, tone up vesels, remove toxins...regards from spain, alvaro

Hi Alvaro, thanks for all the info and advice. I will take this up with my naturopath.

Although we haven't discussed it, I would think that I would stay on this regimen ad infinitum, or at least until someone figures out a cure for the disease. This regimen is designed to hold back one of the destructive properties of MS (or whatever it is I have), so it's not really doing anything to cure the condition.

Thanks for posting a very well-researched regimen. I can attest the efficacy of Milk Thistle. Last year I endured a severe liver toxicity incident--my liver enzymes were over 3,500 (no exaggeration, they didn't think I was going to make it). Luckily I knew about Milk Thistle, and with the small bit of my my mind that was still lucid, I instructed my partner to go out and get it. I started taking it while in the hospital and within two days my liver enzymes were back within normal limits. The docs were stunned. I must add that I also introduced copious amounts of lemon water into the daily regimen as well. Not sure if that had any impact.

Anyway, as the fates should have it, I have an appointment with a neuromuscular specialist that sports some impressive credentials in Ayurveda and CAM. I am planning to present your regimen to him tomorrow.

One other item. Consider researching astaxanthin. It's rumored to be a powerhouse in the antioxidant department. Good luck with your new naturopathic schedule.

Wow, liver enzymes over 3500, that's some serious business. Amazing that Milk Thistle worked so well, and so quickly. What astounds me is that these folk remedies have been in use for thousands of years, so they've certainly stood the test of time. Of course, since they can't be patented, there's no money to do rigorous research trials on them, and so they'll never be accepted by modern medicine. How asinine.

I hope your appointment went well, and thanks for the tip on astaxanthin. My naturopath read your comment, and said that astaxanthin was one of the ingredients she was planning on adding to the mix.

Marc, thanks for sharing your naturopathic journey. I read about Protandim-and the BG-12 comparison- but as I am pregnant have not tried any of the ingredients. I have done Milk Thistle before when I was on Rebif and it was not a problem. I look forward to hearing how it goes for you and working with my drs- ND and Neuro-to sort out what/when I can start some of the supplements. But it is nice to read about a guinea pig's experience and learn from you first.

Yay!! After going through as many gyrations as you have with conventional therapies, I have a good feeling about this path you are taking. After reading the latest research regarding Avonex and Rebif not being as effective as originally purpoted, I am 100% convinced that an alternate treatment needs to be explored. I for one am sick of my route at this point---Avonex, followed by Tysabri, followed by Cladribine infusions----sick of this crap because it's not slowing down anything. I am thinking good thoughts for you, Marc. :)

Yes, the news on the interferon drugs, while not completely unexpected, should make anybody involved in MS research step back and do a rethink. I'll write more about this in a future blog post, but obviously relapse rates and the quantity of lesions are not great markers for judging the state of a patient's disease, and a new model of MS needs to be built from the ground up. There are undiscovered mechanisms at work that nobody yet understands.

Thanks mucho for the good thoughts, I'm sending some right back at you…

Hi Marc. I read your news on the CCSVI blog - although I found your blog a few months back. Thought I'd stop in and thank you for this info. And how awesome to have an N.D. at an MS clinic. I have spms 6 yrs now, ms 23, first 9 dx fibro (usual story). Was on Avonex for 9 years and saw no improvement at all. So not surprised at the news. Am fearful of BG-12, knowing it killed those people in England when used as a fungicide. One side effect I read is red splotchy rashes with BG-12.

I live in Boston. Don't care for most of the MS clinics here. But am seeing someone new next week (from Chicago as I am) so hoping for less arrogance, more common sense and will definitely be sharing this info with him.

Reason being I have seen a 'alternative' doc at Brigham and Women's Osher Clinic. First time I saw him he said exactly what your doc did about ingredients being too sparse when I asked him about Protandim. Wait until I show him your post.

From what I've read, the stuff that is used as a fungicide is not quite the same as BG 12. Same basic chemical compound, but different forms. BG 12 has been used in Germany for many years to successfully treat psoriasis, and I think the most common side effect experienced by patients in the BG 12 trials were mild gastric disturbances and flushing. Not the kind of flushing that follows mild gastric disturbances, but flushing as in suddenly feeling hot and your face getting red.

Good luck with your new neuro, and thanks for your input. I'll definitely keep everyone updated as this experiment evolves.

Hello Marc, Very encouraging news with your new course of herbs, etc. I was wondering what would have happened if you had tried taking 1/2 (of 500mg.) or smaller dose of Ashwagandha (you mentioned the dose would be 2X a night) and you started out slowly with one 500mg. rather than stop taking it altogether? Did the doctor consider taking a smaller dose as not being effective if you couldn't tolerate 500mg.? Or did they think a smaller dose would be just as sedating and make you weak? I speak from experience with myself being extremely sensitive to medications or herbs and I always scale anything back from what most normal beginning dosage would be to try it the first time. So glad you did experience a positive health gain with the liver enzymes. Looking forward to hearing about any new additions to your regimen and hopefully, good results. FYI, my husband was diagnosed with Primary Progressive MS in 2000...he is fast approaching his 72nd birthday next September and we're always interested and look forward to your posts. Good luck. Cate's from Texas

Hi Trisha, I think you can only get Pellitory-of-the-Wall from a naturopathic doctor, as I haven't had any success in finding it for sale on the web. I take it as a "tincture", which is made from soaking the herb in grain alcohol. It comes in a small bottle, and I take half a teaspoon of the stuff two or three times a day. Is there a naturopathic doctor in your area?

There is no doubt that the Naturopathic principles are a sound prescription for creating health. Medical literature is now full of research confirming the importance of diet and lifestyle to our general health and many studies are now relating specific foods and lifestyle practices to specific diseases.

Well, modern medicine has it roots, so to speak, in the natural world. That is where it all comes from. So I expect that if these compounds are helpful, they would be helpful in their natural forms as well. Even if it is just treating the symptoms. There is no reason to put up with discomfort if you don't have to.

http://undergroundwellness.com/wp-content/uploads/2010/09/Glutathione-Study-2008.pdf This study form U. of Colorado shows that the ingredients taken separately may not be as effective as protandum. I do not know who paid for the study.

The pdf file has Joe McCord name on it. Research indicates he is 10% owner of protandum http://undergroundwellness.com/wp-content/uploads/2010/09/Glutathione-Study-2008.pdf This study form U. of Colorado shows that the ingredients taken separately may not be as effective as protandum.

ALA is a universal antioxidant in that it is both water and fat soluble. NAC also works as a universal antioxidant as it supports the liver's production of glutathione. Minocycline is able to cross the blood brain barrier where it works as an anti-inflammatory. This has been working well for me. I was able to ditch the interferon injections and have been relapse-free for 2.5 years with no new disease activity in that time.

To Wheelchair Kamikaze I too had issues with Face Book and even now I still think a moment or two about what I am doing. However, it took me about 3 years and a RRMS diagnosis to actually begin to use Face Book, and it has been quite helpful for me personally and also with my battle with MS. In fact if I was not on Face Book I would not have found you, yet anyway. So I do understand people's 'fear' of Face Book, but it has been quite helpful for my battle.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...